Tuesday, October 21, 2014

Pre-op Appt, VP Shunt Surgery Thurs. 10/30

Today's pre-op Appt went well, nothing to special. The Appt was with my actual PMD(she's very part time but her nurses will add me on to her schedule) so went relatively quickly. We where able to use labs we'd just done several weeks ago so not much had to be done.
EKG was done at my Cardiology Appt last wk so that to did not have to be done. As far as the cardiac symptoms/breathing issues she just commented she'd have wanted a Cardiology consult had I not just seen them (she sent me) and so she was glad we didn't have to try to get that done in time.
Med wise unless Cardiology says otherwise (PMD was going to call them after the appt.) and unless Dr.Bragg/her office would say otherwise before next Thurs's surgery i'll stop Coumadin which is the blood thinner 3 days ahead of surgery. Med wise i'll take Lasix and all cardiac meds the morning of surgery (to prevent heart-fluid overload) though she wasn't certain about the baby aspirin. She feels it should be taken but is Cardiology's call.
In the past as far as knowing if the blood thinner was in-range for the day of surgery Dr.Bragg has done several different approaches from my being admitted to the floor the day before surgery to having me come early the day of surgery and doing labs several hours before at her hospital. The plan this time is admit the day of surgery and I assume just check INR in the 2 hr window between surgery check in and going back to the OR. I assume if they want something different they'll decide between now and then.
Weds. i'll be in Milw. and since it's just easier i'll have my Infusion nurse access my Port (vs leaving it accessed after Monday's infusion and then having to change the dressing when I shower each day leading up to Thurs.) so that is done and no need to convince Anesthesia or a Nurse to access it vs. starting a peripheral. My infusion Nurses real jobs are on the Access Team at Children's so it works out well; typically they will just add me to their schedule, i'll come in and takes about 15-20mins. Having the Port accessed before I come in saves a lot of frustration the day of surgery as Anesthesia usually is against accessing/using the Port and honestly even this way sometimes they only way they'll use it is if Dr.Bragg asks them (she has seen multiple attempts at peripheral IVs).
As far as ERT since surgery is on a Thurs., I may be out in time to get my normal infusion at CHW but per an agreement/arrangement with UW's D6-4 Neurosurgery Pharmacy I call and give them a heads up anytime i'll be having surgery so they can order the enzyme drug to have on hand. This way if I am in-pt I can won't miss. I've not yet called to let them know but the Aldurazyme then gets mixed by the Pharmacy and infused by the floor Nurse(s) using a slightly different ramp up rate than we use at CHW (for whatever reason it runs at a much faster pace if we use the ramp up rate I normally at at CHW so one of the Nurses had re-calculated their rate and works well).
As far as surgery I am just praying we figure this out, that any occlusion would be a simple find/fix and if need be Dr.Bragg works down the entire shunt system to rule out it isn't further down in the distal end. I trust her though and know she'll do whatever she feels is best.
I guess if there's anything else i'll update otherwise surgery is next Thurs. the 30th.
I've attached below a few copies of my Sun School kids at the end of class the past 2 wks. I typically take pics for various Church purposes and then make copies for the kids/their parents which the kids seem to really like having.
As difficult as mornings are these days (I feel quite out of sorts actually and in a zone sort of) I try to get up a bit earlier on Sundays so some of the symptoms are atleast partially worn off and honestly my kids are pretty easy going. I've also figured out how to teach without having to do a ton of actual talking the entire time.
In any case thanks for stopping by,
'The Passover'

'Moses leads the Israelites'

Wednesday, October 15, 2014

VP Shunt revision date, Cardiology Appt.

The VP Shunt revision date is set for Oct. 30th - pre-op Appt is set for next Tues.
While imperfect that the surgery date is further out and you might ask why (Dr.Bragg is out of town I believe for her board certification testing one of these wks.) it also isn't as bad as if I only had 1 shunt and that wasn't working optimally. Given I do have 2 shunts and the TPL Shunt (Thoracic to Pleural draining) is working well and we rarely have issues with it I do atleast have some CSF getting drained and headaches (and associated symptoms) while less than fantastic are also not as bad as they would be where I to have 1 shunt and it where malfunctioning. That said believe me I'd still take a drill and drain the fluid myself if I could at times..

I sort of had to laugh at yesterday's Cardiology Appt., I think Dr.E knew my PMD is who asked that I talk to his Nurse and make an Appt. with him but initially he was like (my paraphrasing) "I really don't think this is solely a cardiac symptoms as you have a lot of co-factors going on that inter-play and could be causing your new symptoms".
I kind of looked at him and just said 'You do realize that's why I talked to my Primary dr. first right?' LOL, I really like my Cardiologist but sometimes he acts more like a Father figure than he does a dr. with the 'know-it-all-ness' but then again he is a Dad to a bunch of girls so probably explains it. I know the 1st time I met him 10ish years ago I thought he was a little arrogant (but seemed knowledgeable) and i've come to figure out is just that he cares though he can initially come off a little brusque. If you don't know his approach well I could definitely see some pts. being offended; his personality is something of a joke (not a bad one) amongst his pts.
As far as what does he really think is going on? He commented from having read one of Dr.Bragg's more recent clinic notes (they are not at the same hospital but both practice out of the 2 Children's Hospitals in WI) that he does not think our cardiac issues would impact/influence the headaches and he does not think an issue with oxygen getting to the brain is the cause of the H/A's. His thinking if I remember right behind this was 1. The aortic valve is working well now that it is fixed and 2. the Mitral valve has less of an impact on this area (but definitely don't quote me on the 2nd part).
I obviously don't know and all I know is the aortic valve is functioning well post-the re-replacement last Fall and the Mitral valve is at the edge between 'we can wait' and 'we'll have to intervene' but he is hoping we can wait as long as possible.
As far as symptoms he had a few thoughts but really didn't want to adjust meds as he is concerned I am already on quite a few (5 different cardiac meds in several different classes to be exact) at relatively high doses and is concerned any dose adjustments would "upset the balance".
His 2nd thought is repeat the breathing tests as it could be related to the restrictive lung issues (same symptoms prior to the aortic valve replacement/re-replacement so seems less likely but anything is possible) and asked that I use the inhaler (Xopenex) I have more routinely (I have it but never use it now) and especially when going to be active.
3rd. Instead of repeating the Echo in March at 6mo's he is repeating it in Dec. (the day before I fly out to the Disney Conf. actually) and f/up with him after. If anything changes or new concerns between now and then let him/his Nurse know.
I personally think these symptoms are cardiac, basing them off of how I felt prior to the aortic valve replacement and how I've felt over the past few weeks. How I can sleep 8 hrs or I can sleep 12 hrs and I still feel pretty much exhausted. The weird sweating (not as bad thankfully) which I think is autonomic and impacted by the shunts, the breathing and intermittent but frequent heart rate changes on top of the intermittent blood pressure changes. That all said I also know I went like this for a period of a year or two before the aortic valve got to a 'severe' range so it is quite possible this mitral valve will stay the same it is to for some time to. This would be fine b/c I don't really want to go through another heart surgery and all that entails although at the same time I am amazed in the last few wks how little I noticed the seeming energy improvement after the 2 OHS last yr. until it just wasn't there anymore again these past few wks!?
I guess on a positive note since I had to be there the NP whom followed my care both in the hospital after both OHS and then for 6mo after during each cardiac f/up stopped up to say 'hi' today. Normally Dr.E's Nurse Jane does pre-appt vitals, med check, etc. but Nancy did so today, just to check-in which was nice. I might add both are extremely nice and easy to work with though. =) Nancy and i've talked on the phone a few times (INR results) since she hasn't really been closely tied to my care since last March but otherwise we'd not seen each other and so was a nice surprise. =)
Un-related to the actual issues I was there for but something Dr.E has brought up before, he brought up how easy it has been for them to work with my primary insur. to get approvals/authorizations. Cardiology like Dr.Bragg is an out-of-network Specialist exception and so my Insur. Nurse Case Man. when our Insur. had 1st switched to a HMO a couple yrs. ago got Prior Auths. (PA's) in place which cover certain care and tests in addition to the drs. each for 1 insur. benefit year at a time. In the case of Cardiology they apparently have other pts. who also have Dean Insur. and must have a fair bit of troubles getting PA's approved for out of network tests, drs., etc.
Dr.E has commented several times over the years maybe they should just have me doing the paperwork for them (lol) but really for me it's just been a matter of being persistent and involved, sometimes pushy to get things done though my C.M is a huge help to!
I personally think patients have to be informed of their benefits (what coverage they have) and almost more importantly request a Case Manager be assigned to their care as that 1 person is then your entire point person for ALL Insurance questions or issues. I know my Insur C.M works with my Genzyme Insur. (drug) Case Manager when it comes to questions on that end, and with the Neurosurgery fl. staff from time-to-time and has often been my go-between for the Medical Director at Dean when issues have come up.
Somewhat jokingly (and yet it's true) I commented that as much as I often hate asking questions I am not afraid to push for and ask things when I am not sure and that to is important in getting the care and coverage pts. need. He smiled, laughed and agreed about my not being afraid to ask questions either right away or later on. I think all my Providers know my hesitancy but also know I'd rather be informed than mis-informed or not understand and I'd rather as much as possible get things done on my own.

In any case no earth shattering news, and nothing exciting (which is ok).
I'll update again when there is anything,